It's going to take me forever to get through the story of my dude this way, but with this post, I'll try and get pretty close to present day.
Buckle up. This could be a long post!
When he was about 4 months old, he started occupational therapy. His first goal was to be able to tolerate 10 minutes of handling (basically being held) without screaming and then crashing into sleep for the rest of his session. It took him about 6 months to reach that goal.
One day, while I was buying groceries, I noticed a baby, younger than my own, facing me in the shopping cart ahead of me in line. That baby looked at me. Right in the eyes. I didn't notice before, but my baby boy hadn't done that. Ever.
I mentioned this to the neurologist and the pediatrician. It was so hard to convince them that I meant it when I said that I didn't think my baby could see. They tried repeatedly to dissuade me from calling him blind, but can I just tell you this? A mother knows. No matter what. A Mother Really Knows her kid.
There is actually a test they can do when someone is asleep that can tell how much signal gets into the brain through the eyes. My baby failed that test.
When he was 4 months old, we had a follow up appointment with the neurologist. During that appointment, the doctor noted that he seemed to spit up quite a lot. He was a runny faced kid, no doubt, but I didn't think it was too much. He didn't drool ever, but he did give back a lot of his lunch no matter what meal it was.
The neurologist recommended seeing a gastroenterologist and the gastro's recommendation was to start my dude on some Zantac. For real. The same stuff they make for grown ups, only this was for babies.
After one day on the new medicine, his life changed. He didn't scream anymore. Even when he wasn't in his swing.
My baby's tummy was hurting all that time. Ugh! It broke my heart to realize that I didn't notice his reflux. I just thought he spit up a lot. I was able to get over the guilt of that when I realized that while he was on Zantac, he didn't poop. So, they started him on another medicine to help him poop. That was good, though it was a difficult drug to find. It had to be compounded every single refill. If you know me, you know I really stink at the pre-planning crap. So, he'd go a few days without pooping and I'd realize that I should probably get a refill on that magic drug. I would, and he would poop. Amazing!
He started to demonstrate a little bit of a personality during this time and we noted that he was happy. For the first time in his life!
A couple of months later, he started to be fussy again, so I worked with his OT to teach him a couple of signs. He learned 'more' and 'all done' and that met his needs for the next few months. Who would have thought that a developmentally delayed kid would want to communicate at 6 months?? But he did. He really did!
I learned during this time that doctors practice their job and I, as a mother, am expected to actually do mine. I learned that doctors would respect me if I told them 'what for' in a respectful manner. That if I presented my case effectively, they would listen. AND maybe they weren't right at first and that it was my JOB to make sure they kept investigating to find the real answer to my boy's realities.
From the time he was born, lots and lots of prayers were raised asking for healing. Honestly, I was kinda tired of asking God to heal my baby. I had begun to understand and accept that God has until Heaven to heal my baby fully. He will be whole in the end and that's really enough for me.
No matter, there was a healing service at my parents church when my middle (though not yet middle) mann was about a year old. My parents really wanted me to go. They wanted him to be prayed for again. Again. Seriously? I was okay with the fact that my baby wasn't whole here. Since that was very much my plan - to be fine with a baby that was broken - I went to the service. About 5 minutes before it was over, I really needed to get my little boy.
I brought him from the nursery into the service itself and before all was said and done, the pastor prayed with him.
I gotta tell you, I was skeptical at best.
But, my baby was happy the next day and he seriously rolled to a toy. He saw the toy and rolled over to it.
Life was never the same.
Also, the seizures stopped after he was about a month old. It took the better part of a year to get him off meds for it, but I did it. Also, I had the vision test re-done after he rolled to that toy and he passed the second time. That, apparently, isn't supposed to happen.
His development was slow at best. There were therapists that came to our house. There was therapies that we went to about 3 times a week. There was still a lot of fussing and he didn't eat solid food like normal babies. He only nursed. For one and a half years.
Thanksgiving always brought some gift to me from him. His first year, it was a friend we took to the hospital instead of him. The second year? He ate stuffing and drank egg nog! FIRST SOLID FOOD EVER!!!! YAAAY! Unfortunately, Thanksgiving food isn't available all year long. I made egg nog from scratch for a while, but then I just got tired of it and nursed him until he was about 3 years old.
Eventually, he figured out the cup and food. Although, the texture of stuffing remains his favorite.
His development was pretty boring for the next couple of years. Honestly, he didn't change much.
Alas, I did not get really close to his current age, but we're about the 3 years old. That's some progress comparatively! Hopefully, I'll be all caught up in Part VI!